Charlotte's Journey

Charlotte is feeling better but her counts are still low and so it's a waiting game right now. After 5 rounds of some serious high dose chemo, it is taking her body a little longer to recover. The team doesn't want to discharge her until her absolute neutrophil count (ANC) is at a specific level and climbing. In the mean time, we are grateful to be where we are even though there are times we really want to be back home with our family. The good news is that fever was just 24hrs, cultures all negative, and an open sore that has developed in her bottom area is starting to clear up. The team rescheduled her CT and MIBG scan for tomorrow afternoon. I don't know if we will have immediate (preliminary) results but my heart is hoping so. Brian and I just want to see the visual of where we stand with this tumor. There is no medical reason to believe the results would cause any backwards thinking as far as the surgery goes...but the worrier in me NEEDS to see that this cancer has

Things sure change fast around here. We woke up this morning with plans to come into the hospital for an injection as a preparation for her scans tomorrow. I already had made arrangements for both Taylor and Parker to attend a fun daycamp for the next two days. Charlotte woke up much later then normal this morning obviously not feeling well. She had a low grade fever. I dropped the kids off and we headed to the hospital for an already scheduled clinic visit and injection. By the time we got here, her fever sky rocketed. Sitting on my lap moments after the nurse left the room, she projectile vomited. My immediate thought was perhaps this is a good thing and she simply has an innocent stomach bug instead of some bigger infection. So we are admitted for next several days while her white cell counts are low (neutropenic) and the fever goes away. Our hopes are negative cultures and a quick fever with a quick resolution. They will postpone her CT and MIBG scans scheduled for tomorrow as th

I've said this before and it has never been more true then right now, but it is easy to get lulled into some false sense of security/normalcy when things are going smoothly. Today was an important wake-up-snap-out-of-it check. A reminder that there is a deadly beast living inside of our baby girl. And the time is near for the surgery to remove it. Charlotte completed round 5 of chemo today. Aside from slight nausea and some fatigue, she is doing great. We are bringing her home for recovery this afternoon! It is important for her body to heal and for all of her cell counts to be up to healthy levels before the abdominal tumor resection surgery takes place. Today was a step in the direction to plan for this surgery. Brian and I met with our Duke Pediatric surgeon this morning. She has performed all of Charlotte's operations so far. And when she left the room, we could actually both smile at each other and let out a big breath (of relief)! Our job, at this time, has felt overwhe

This week was a great reminder that sometimes our own plans pale in comparison to what God has in mind. We just simply hoped it would be possible to bring Charlotte to our family beach vacation for a couple days after she finished Chemo. But God had a better plan. Instead, she got to enjoy 5 fun sun filled days at the beach with her family! And today, she is back in the hospital beginning round 5 of chemo. Vacation is over. It's time to get back to work. So, Brian drove Charlotte back to begin this next round while I got to stay back for an extra day with Taylor, Parker and the rest of the family. It was truly special to get some extra time with them and also wonderful for Brian to get one-on-one time with Charlotte. She is feeling so good this week. She was filled with happiness and enjoyed all the simple pleasures of being on vacation with her family. When she wasn't running on the beach playing "go feet go!" (a game she made up where she would run towards and the

She did it!! Again, God's timing is amazing. What a gift he is giving us. Who knew an abscess on your bottom could be such a blessing haha! Sent home on oral antibiotics that will hopefully clear up any infection and chemo slotted for Friday! Walked her down to the beach this evening and watched the joy and awe in her eyes. She will get to enjoy a few days here with some of her grandparents, her Aunt Lynn and Uncle Alex, cousin Allison, and of course us! We can hardly believe it. And if anyone is able to find joy in just being here regardless of having to sit out of the water fun, it's Charlotte. Because this view beats the hospital room any day! Look at her go: the ocean--what symbolism of a great journey

Set backs are common and it's hard to believe Charlotte has been healthy enough to start every round so far on time. We found a site of possible infection outside of her little bottom. The small lump is very tender to the touch and after an unscheduled CT scan today to verify it was nothing major, our doctors believe after some antibiotics we could see it clear up. (Possibly caused from mucositis last week and when she went home and off antibiotics it festered). So we will stay through the weekend on IV antibiotic with hopes it starts to clear it up. If it's looking better then we will be discharged to take the antibiotic orally for a few days while it clears up. Chemo would then be postponed until later next week. Silver lining: if it looks better Sunday then we could be discharged by Monday and take her to the beach a day early returning for chemo by Friday. For now, she is being a charming goofball and in great spirits knowing again we must stay to finish the medicine in our

Just wanted to quickly update our village that everything has checked out so that Charlotte is ready to begin round 5 today! We have been admitted and so our girl will "keep going! Keep moving!" forward. The hope is to be discharged Tuesday next week and then bring her to meet up with the rest of the family at the beach for a couple days. Our doctors believe this could be a good time to steal her away for a couple days before her next set of scans (June 21-22) and then the scheduling of her surgery that following week to resect the abdominal tumor. We will pray that she tolerates this next round with minimal side effects (which has the same 2 chemotherapies as her 3rd round.) We feel God wrapping his arms around our baby girl and giving us all strength. For now, during this hospital stay, we will envision our girl with the sun on her sweet face, the awe in her eyes as she sees the ocean and its vastness, the ocean breeze blowing what's left of the stubborn hair on her hea

Joy and pain live so close by these days. The sun is shining, and all three children are happily playing together (by acting out an imaginative world where Taylor is a lead dolphin rehabilitator, Parker is her assistant and chief weather forecaster, and Charlotte is the baby dolphin in need and being trained in this marine facility also known as our living room!). I'm watching while sipping coffee and then they thrust me into their world as the audience of Charlotte's performance guided by her trainers, Taylor and Parker. I wouldn't want to be anywhere else. Then, as if jolted out of a dream, fear and pain creep slowly in.  I try to chase them away, but I cannot not. Joyful one moment, a teary eyed scared mom the next. Joy and pain. They are both close to my surface and I can not always control which one is being felt. Laughing one moment, a puddle of tears the next. Joy and pain: a delicate balancing act right now. I see old pictures and videos of last June when we were